Hello evryone, my name is lenny, I was diagnosed in late sept with cancer in right tonsil that had spread to lymph node, in fact that is how I found out, I have already completed 33 imrt radiation as well as 3 sessions of chemo with cisplatin, and am battling the usual taste problems, saliva problems with some difficulty swallowing, I am having a radical neck dissection on wed Jan. 11 and I sure am scared out of my wits, still using the peg tube , I keep trying different foods daily, few work, however yogurt does as does mild salsa, can you believe that. Are there many long term surviors once it has spread to the lymph system I am so scared as to what they will find.

My husband Barry finished his chemoradation treatment for Stage IV SCC, (tonsil, base of tongue and two lymph nodes) at end of September -- no post-treatment surgery -- and just had his three-month check-up and PET/CT scan and all the exams say that there is no sign of residual or recurrent cancer. Now we know that this is not 100% and he will have to be monitored for some time, but it still shows that this disease can be treated and the beast brought to heel.

Btw, he is eating almost everything now, never wants to see another can of Boost (or generic equivalent!) <gr>

Gail

Lenny, the neck dissection was the least painful part of my husband's treatment [after a couple of weeks]. By the way, have you tried "Danny Boy's" shake recipe yet? Hang in there. Amy

Thanks so much darrel,gail mac and Jam for your responses they are very uplifting , and I sure do need it at times . I have a huge family and friend support network here in rochester that is unbelievable, however I live alone and night time is the worst when I am alone with my thoughts it makes sleeping difficult and I always anticipate the morning. I keep pushing myself daily to more and more things of my past routines, however getting back to being in front of the classroom seems to be a long ways off, my damn throat is to sore for one. I am glad that i found this site and hope that I will keep hearing those positive reassurences they sure provide a needed boost thanks so much and god bless you all.

Lenny, Hello from a fellow teacher. My cancer had spread to the lymph nodes in my neck and surrounded my jugular vein - primary tumor in the base of my tongue. Its nearly three years since my diagnosis and I am doing just fine. I had no surgery, but lots of chemo and IMRT.

Use your peg tube to keep your weight up, and to get the balanced nutrition you need to fight the beast - your body needs good fuel. Swallow as much as you can, but don't let a sore throat rob your weight. Pour in LOTS of water during treatment- it helps. Being scared is both logical and rational - its appropriate. You can beat the beast - we all have done so. Its not easy and its not pain free, but it can be done.

Come to this site often for encouragement and advice. You'll get lots of both! Your classroom will see you again. You're not done teaching yet. Your throat will hurt more for a while, then it will quiet down - way down. You'll wonder if the beast would be better than the treatment - then it'll get better - lots better.

Get mad at it. Fight hard. We are with you - you are never alone with the beast here - it keeps a respectful distance from this group. Be strong. Tom

Lenny, I can add little to the good advice you have already received. Pay particular attention to what Tom says about the PEG. Water is vitally important, so one way or the other, stay hydrated.

With regard to the neck surgery, it is not a big deal -- really. Pretty much a piece of cake after what you have already been through. This will not be painful and will not set you back in your recovery from rad and chemo. By the second day after my neck dissection, I was off pain meds. Expect swelling, but that too goes away in a short time.

I had mets to lymph nodes, also around my juglar vein, and am 4 years out from diagnosis, feeling and doing everything I was before it all hit the fan.

Lenny, you are through the worst of it, and will see slow but steady progress in your return to full function. Keep us posted on your progress and feel free to ask any questions that arise.

Joanna

Hi Lenny,
I am not sure about the staging of your tonsil cancer but mine is pretty close to the terminal one (stage 4B) and I am still alive and have been in remission for over 4 years. I didn't have surgery but most people said that it is not the worst when compared with chemo or radiation. I received traditional radiation (48 sessions) and 4 rounds of cisplatin concurrently to beat the cancer. Swallowing was only very difficult for a couple of weeks and it gradually improved. The mouth dryness is my permanent problem but I can talk and enjoy my life without constant sips of water if I have candies or chewing gum. With IMRT, your dryness problem should not be that serious. Don't worry and I am sure you can go through the ordeal, like most of us here. I was able to resume my job as a school teacher after taking sick leave for 7 months and have continued teaching without falling ill for 3 whole years post cancer treatment.I chose to retire early last September to enjoy my life.
Karen

Hi Lenny,
Just another note of hope. My husband's a teacher too and just returned to the classroom. He was worried about hoarseness but it is improving each week. He was diagnosed in July and completed treatments end of Sept. Hang in there - he no longer has his Peg and sometimes thinks he should have kept it a little longer for weight gain purposes but he's gaining slowly anyway. He reports that he really is feeling good though in a new way. He too found his tonsil cancer because of the lymph node enlargement. Take care.
Janet

Lenny,
I was diagnosed with Stage IV, base of tongue SCC with 4 neck nodes. Lots of radiation with a little chemo, but no surgery. I had a PEG tube for 10 months and quite a difficult time swallowing for a while.
Now I am over 3 years out and can eat just about anything that is not too spicy and play golf, work out and do just about whatever I want.
I am a trial lawyer and although I don't do so every day , I have tried 3 jury trials since my treatment.
I also lived alone when I went through the treatment, and yes, the nights were a little rough during the period shortly after treatment ended. However, that passed fairly quickly, and I began to feel much better both physically and psychologically. I did have some depression around the time that treatments ended, but I found a men's cancer support group, attended one free session of counselling, and soon was doing fine.
There is lots of room for hope.
Welcome to the board.

Danny G.

The strenght and courage and determination of the people on this forum set a new standard for how to live a life. Amy

Hi Lenny, my cancer on tongue also spread to two lymph nodes, I was diagnosed May 10, 2002, had surgery and 7 weeks radiation. I am doing well, even helping out in my Church office, it is so scary but there is light at the end of tunnel. Hang in there. Carol

Once again I am overwhelmed at the support that I have found here I only wish I had found this site earlier, now I will do my best to help others if I can. Going in for surgery , radical neck, on wed so I will be away from this site for a week or so, a few days in the hospital then I will be staying else where to recoup, I will be back around hopefully with good news and some support for others.

Lenny
I just wanted to send you some good positive vibes for your surgery on Wednesday!
We look forward to hearing from you ... when you are on the road to recovery.
Take Care
Marica

Lenny, my father had tonsil cancer that meandered to a node. The surgery was a breeze. What was nerve racking is that they put him under first to biospy the primary. If it was positive, they weren't going to move ahead. Well, it was negative and his nodes were too. He was in the hospital for only 2 days. YOU WILL DO GREAT LENNY. It is so cliche but after what you've been through the surgery is nothing. Think positive, I will pray for you!